In late March of this year, the U.S. Food and Drug Administration approved a Biogen Idec drug by the name of Tecfidera (dimethyl fumarate or BG-12) for on-label treatment of relapse-remitting multiple sclerosis. This long-awaited decision comes on the heels of research trials showing significant reduction in the number of MS relapses, the rate of disease progression, and the appearance of new lesions on MRIs among patients taking the pill.

The medical and pharmaceutical communities expect this FDA approval to make Tecfidera a blockbuster drug. According to a story in the New York Times, annual expected sales of this drug are expected to grow beyond its current market of over $8.5 billion in the U.S. alone. Canada recently gave it a seal of approval as well, and the drug is currently being examined for on-label use for MS in the European Union and Australia.

Are You a Good Candidate for Tecfidera?

Whether or not you could benefit from Tecfidera will depend on where you are in the MS diagnosis process. If you already have a confirmed diagnosis of relapse-remitting MS, your doctor can tell you if you may be a good candidate for the drug. Tecfidera is not approved for official treatment of forms of MS other than relapse- remitting.

Tecfidera treatment may be a helpful drug for initial treatments in newly diagnosed individuals as well as people who have had MS for many years. Furthermore, Tecfidera doesn’t have to be anyone’s drug of “last resort”—it can be used from Day One, meaning the newly diagnosed don’t have to go through a slew of other meds before giving Tecfidera a try.

Some of the perks of the drug are its simple treatment form (an oral pill twice per day) and its lack of serious side effects. At this time, negative reactions to the drug seem to be rare and relatively mild compared to the effects of other MS treatments; most negative side effects (like flushed skin or diarrhea) tend to go away after a few weeks on the treatment. As an added bonus, the FDA doesn’t list any contraindications for the drug, although some physicians may delay or stop treatment if the MS patient has a serious infection or very low white blood cell count.

No matter where you are in terms of MS progression, Tecfidera could be a promising treatment to help you avoid MS attacks. However, individuals who are unable to comfortably swallow a pill must discuss this problem with their doctors—Tecfidera shouldn’t be crushed or chewed. The pill can be taken with or without food and drink and is otherwise a pretty low-maintenance treatment course. MS patients will start with a lower dose (120mg twice a day) and bump up to a higher “maintenance” dose (240mg twice a day) after the first week.

Just an FYI About Tecfidera

So far, the news about Tecfidera sounds like very promising for thousands of MS patients. Just to make sure you are aware of the cynical positions on the drug, however, I’ve summed up a little list of the common critiques:

• A form of Tecfidera used to be used as a spray on couches that often caused skin irritation when people sat on the furniture. (Note: It has been reformulated and has very good tolerability in patients taking the drug for MS and psoriasis.)
• No one knows how or why Tecfidera works. (Note: This is more common than people like to think when it comes to meds. Suffice it to say the experts believe it calms the immune system and has high levels of antioxidants that may protect the nervous system.)
• The drug should be more thoroughly compared to other treatments for relapse-remitting MS. (Note: The drug has been shown to far outshine placebo treatments, but thorough comparisons to other MS drugs or therapies are still needed; the ease of the drug regimen and its lack of serious side effects are already high in Tecfidera’s favor, though.)

Whether or not you choose to pursue Tecfidera as your preferred MS treatment should be decided together with your healthcare provider. No matter your decision, let’s be grateful that Tecfidera represents progress in opening the drug market to the exploration of more effective (and more livable) treatments for MS.

I was diagnosed in 2006 with multiple sclerosis, the only symptoms at that time were falling and legs hurting and moving all the time. I remember no symptoms at all until last year. I went into full seizure mode, I was put on Avonex. I had the symptoms of that medication every day for 13 weeks, I mean I was so sick every day. I stopped that medication and a few days later I was back to my normal self. Then a few weeks later I started having attacks every week and I was really bad. It’s like one long attack every day. My upstairs neighbors cause me great anxiety every day. I have gotten a new neurologist and she started me on the Copaxone and I didn’t know what to expect, I knew I hurt from when I wake up until I go to sleep.I lost touch with reality.I started on Health Herbal Clinic multiple sclerosis Disease Herbal formula in June 2017, i read alot of positive reviews from patients here in the United States on their success rate treating multiple sclerosis through their Herbal formula and i immediately started on the treatment. Just 7 weeks into the Herbal formula treatment I had great improvements with my Vision and coordination, my stiffed, rigid muscle had succumbed. I am unbelievably back on my feet again, this is a breakthrough for all multiple sclerosis sufferers, visit Health Herbal Clinic website.

I was not really having a problem breathing at first. My throat was burning; I thought I had strep throat. I had pain in my neck, and there was swelling around my collar bone. The first doctor I went to said he did not know why there was swelling. He gave me antibiotics and told me that if the swelling was not better to come back in two weeks. I went back in two weeks and he said he did not know what was wrong. Since I do not have insurance, I went to a hospital emergency room, and they said I have COPD.The disease does not improve. My “good days” are far and few these days. My dad and his dad died from this. I am only writing this to inform others that nothing was really working to help my condition.I started on COPD herbal formula i ordered from Health Herbal Clinic,i read reviews from other previous patients who used the herbal formula, my symptoms totally declined over a 5 weeks use of the COPD natural herbal formula. i am now doing very well, my lungs are totally repaired!! Visit there website

I was not really having a problem breathing at first. My throat was burning; I thought I had strep throat. I had pain in my neck, and there was swelling around my collar bone. The first doctor I went to said he did not know why there was swelling. He gave me antibiotics and told me that if the swelling was not better to come back in two weeks. I went back in two weeks and he said he did not know what was wrong. Since I do not have insurance, I went to a hospital emergency room, and they said I have COPD.The disease does not improve. My “good days” are far and few these days. My dad and his dad died from this. I am only writing this to inform others that nothing was really working to help my condition.I started on COPD herbal formula i ordered from Health Herbal Clinic,i read reviews from other previous patients who used the herbal formula, my symptoms totally declined over a 5 weeks use of the COPD natural herbal formula. i am now doing very well, my lungs are totally repaired!!

I was diagnosed with Fibromyalgia around 6 years ago although I’m certain I have had it much longer than that. I have suffered from sleeplessness, joint stiffness, severe pains, depression and fatigue. My neurologist prescribed duloxetin 40mg daily (Given as 20mg twice daily), although it did relieve some of the pain, I still suffered from joint stiffness and extreme fatigue. Finally, i started on Fibromyalgia herbal formula i ordered from NewLife Herbal Clinic, this herbal formula did the magic! almost immediately i started usage, i started noticing a general reduction of symptoms including the very severe pains and fatigue. 9 weeks into usage, the disease has totally succumbed to this herbal treatment. The whole pains and terrible fatigue has seized and i am now able to function fully well again. (Visit www .newlifeherbalclinic . com or email info@ newlifeherbalclinic . com) I’m able to get out of bed in the morning and have more energy to go about my daily activities.

I have been on Tecfidera for about 3 years now and have had pretty good luck on it. I get flushing every once in a while but that’s it. My husband and I want to start a family soon so I am going to go off of it. Any recommendations on stopping? Can I stop cold turkey or do I need to ween myself off? Thanks!!

Ive been on tecfidera for 6 months now. Ive been more miserable during this this ever before. This is my only pill option, after having allergic reactions to copaxone Ill do without! My neuroligist still is urging me to try but 6 months was a good run. I just cant do it anymore. At 31 Im told Im to sick to plan my own wedding, in writing by my neuro. Still waiting for hearing for SSI 6 years later when I get my check if I do I am doing stem cell I’ve only heard good things for years and years I’ll try anything now to not be this sick so young. Good luck to you all!!!

Hi, I started 6 days ago Tefcidera after 4 month of Rebif.
I’m on the 120mg dose once a day. the only side effect I have is headache, and relief pills doesn’t help. any one have it? is it getting better?
thanks a lot.

I was just diagnosed with MS in August and started Tecfidera then. The first 3-4 weeks for me were pretty awful. I had the flushing as well as GI symptoms (with headache) so bad that I honestly thought I had the flu. Into my 5th week on the maintenance dose it was like a switch went off and no more side effects – I have to say I have felt pretty good since. I do have to take it with food, but other than that it’s been great! My neuro’s nurse told me to hang in there, and she was right. Hang in there!!

Hello! I was on Copaxone for 2 years, and began having serious side effects until I finally has one so severe that my lips were swelling. No more Copaxone. (Didn’t hurt my feelings – I have skinny arms and it was something else trying to inject into them – LOL) So, my neuro decided we could try Tecfidera. No GI issues (a true blessing), but over time awful flushing with pain. This morning, a few hourse after taking my first pill, I experienced lower back spasms, light flushing, tightness in my chest – has anyone else had this problem?

Hi Cindy. I am newly diagnosed and I am 2 weeks into taking the tec. I have had all of these side affects but they are getting better and not as bad. But I did notice I am putting on weight but eating less. I had stomach by pass and should not have weight gain. I am hoping this will stop soon.

I was diagnosed with ms in 2009 and have tried a few different treatment options. I started on trecifidera about a month ago and it’s been one long month. I was told by my nurse this morning that I’m right in the middle of the worst part of the medicine and that this is normal. I have never felt so bad in my life but I plan on giving it another month for things to get better. I’ve had severe fatigue, severe brain fog, aching, flushing and three severe and sudden episodes of throwing up. Once while driving! Hopefully a month from now I’ll have a different story to tell. I hate to hear that others have issues too but nice to know I’m not alone too.

Hi. My name is Yolanda. I was diagnosed in 2012. Was on copaxone until I had the worse reaction. So my Md changed me to tec in July of this year. What I did to help relieve the flushing I take 325mg of aspirin 1hour before then make sure to take something high in protein to slow down the flushing. And gi pain. I’ve had this flushing episode once. But doing way better now.

Ive been on tecfidera for 6 months now. Ive been more miserable during this this ever before. This is my only pill option, after having allergic reactions to copaxone Ill do without! My neuroligist still is urging me to try but 6 months was a good run. I just cant do it anymore. At 31 Im told Im to sick to plan my own wedding, in writing by my neuro. Still waiting for hearing for SSI 6 years later when I get my check if I do I am doing stem cell I’ve only heard good things for years and years I’ll try anything now to not be this sick so young. Good luck to you all!!!

Ive been on tecfidera for6 months now after my reaction to copaxone very similar to your! I am now the most miserable I have ever been. Im done now I felt better not on any ms meds which have done nothing for me but make me sick. Neuro says back to injectables if this fails but I wont do that again either. Praying for stem cell some day till then I decided I cant do ms meds anymore! Good luck to you all I would not wish this my worst enemy.

Sorry to hear none of the meds working well for you. I am in similar boat where the side effects from meds make me feel worse than the disease itself . I am trying antioxidants like COQ10, mitoq , vitamins c and e and also make sure your D levels are good.

Wow. I am really sorry to read about everybody’s trouble with Tecfidera! I have been on it for almost a year now and have had no resent issues with it. Apparently, I’m one of the lucky ones. Don’t get me wrong, it was a miserable time for about the first 3 or 4 months I was on it! I had flushing and gastro issues to the point I had to leave work several times. But I hung in there. I came off Tysabri (I’m JC positive) after almost 3 years to go on Tecfidera. Being a pin cushion once a month was fine with me. But I ABSOLUTELY REFUSED to go back on any of the injectables. I will take no meds rather than go back on an injectable! But anyway, after those first few months of misery, I haven’t had anymore issues. Nothing has gotten worse and no relapses. I did have a bout of optic neuritis in January. However, I suspect that was from the stress of having an IUD taken out an a new one put in because the ON occured a few days after the proceedure. If anybody out there has had or does have an IUD, you know what I’m talking about! I in no way think that there was a failure of the Tecfidera. Sometimes I still flush. I have figured out the solution to the whole flushing thing is to eat something substantial right before I take the Tecfidera. The higher the fat content of the food the better. What I mean is, you can’t just eat a piece of fruit or a piece of toast and think you’re good. You have to pair it with whole milk, yogurt, cottage cheese, etc. I would say to all of you having issues, tough it out if you can. I did and I’m doing OK.

I have been on tecfidera for 4 months now . First month was horrible. I had ever symptom except for flushing. I recently started limping when I get really really tired. Because of this my doctor in england wants me to switch to tysabri….. not sure what to make of this recommendation….

I started Techfidera on March 1. I have recently started the flushing issues. Throughout the years, I have been on 3 different SQ meds, 1 other oral. I have not had a substantial relapse in 3 yrs although daily balance, memory and bladder problems are always a factor. I look forward to this journey…the flushing just accept it…its not that bad…play with it…make a scrowling face…then smile at the person…will confuse them..

Jennifer,
Glad it is working for you. I am on day 4. Reading the phrase belly cramps and ache is misleading. First dose I lost five pounds … now I am getting the flush and runny nose. If this is the worst of it I am in. Will update next week.

I agree Rebecca. The first month was terrible. I never sweated so much in my life. I was also achy. Internally I felt beat up. However I continued to take it and I feel fine. I used to take t ysabri but I had 2 relapses within 2 months. I am hoping this medication works better.

I was wondering if you could answer a question for me I have looked everywhere but can’t find the answer I’m on my 5th day of tecfidera and I have been experiencing a very dry throat and flushing I think tonight. Do you know when you start getting any side effects and can you please let me know and if there’s a website I can get info from please let me know thanks

230 am
I had to take a hot bath just to ease the pain and be able to sleep
630 am
The painful muscle aches have dissipated to a remnant of the pain I experienced yesterday and during the night. I attribute this to my not taking the day’s second Tecfidera last night, as two hot baths did not help yesterday and nothing else has changed. I’m quite afraid of taking another Tecfidera pill and won’t, but will try to revive my Copaxone prescription. Hopefully any damage that has occurred will be reversible.
However I’m worried about a fifth possibility: that the Tecfidera generated the worsening of my condition and the damage is irreversible.

Where are you now in the tecfidera challenge?I woke up this morning feeling so miserable I think I need to stop this drug. Ironically am not having any of the flushing, gasto stuff etc. This is more like having my ms flare in very weird ways. I am tingling all over, anxious, feel totally stressed out, dazed and super congested. This has gone on for the 2 weeks since I restarted and this time around not feeling like it’s much better then my first attempt on this drug for the 4 months last time. Thought if I stayed a lower dose for 4 weeks might handle it better but pretty miserable.NEVER felt strange like this on copaxone!

I agree with you, Sharon. I have been taking tecfidera for about 6 weeks now, and have never felt so bad since my early MS days (and actually worse than that).

My balance and proprioception are way worse, I’ve gotten a bladder infection, can barely walk around my own house. Now, that’s just the physical effects; the psycho/emotional effects are worse. I know it, and my husband says the same thing – I’m just not the same person I was pre-Tecfidera – it has taken over my whole persona.

I’m going to stop this treatment, and go back to copaxone (even tho I hate the needles). I’ve just stopped cold-turkey, because I can’t tolerate the Tecfidera drug effects anymore.

Sorry didn’t reply earlier but just saw your post. Thank you for helping me not feel crazy! I went back on the new 40 3x week and wow craziness AGAIN. Going back on 20 which I only do every other days anyways after 14 years. Guess the lesson is stick with what works even though you hate needles. BTW the 40 was mood swings, loss of appetite , have a new exacerbation which have’t had in 20 years. UGH!!!

Hello, I have tried Tecfidera twice, awful. So many side effects. I will be retarting Copaxone, was on it for 14 years. Is it easy to restart it again. I have heard it is and also that it is not ?? Confused

Hi i am just reading all these posts now and hope everybody has been okay.
I just stopped taking Tec a couple weeks ago because it was making me just go to the bathroom all the time and that stomach ache when you have the runs, couldn’t bare it anymore. I am also on Lithium with they upped, so not sure which dmt to try next if any. I woke up this morning feeling like i am in relapse. Bad vertigo and spaciness, so i hope its not my lithium but its side effects are hard to tell from ms. At a loss as to what to do., surely stopping Tec wouldn’t cause me to immediately relapse would it?

I’ve been taking Copaxone since 2008. I didn’t mind giving myself the daily shot, but the prospect of just taking a pill twice a day was intriguing, and my neurologist told that she had over 100 patients on Tecfidera and they all liked it, so I decided to try it. I’ve been taking it for three weeks.
I have symptoms that may be the result of my taking Techfidera.
1- I am very fatigued. I sleep 8 hours a night but want to go back to bed an hour after I get up. I take several naps during the day and am never energized, but am tired all the time.
2- I have muscle aches in my back and my legs, want to calm them with hot baths, which I ordinarily avoid.
3- I have lost some of my balance and have to be much more careful to avoid stumbling.
4- I have trouble concentrating, even reading a book.
5- I am quite depressed, both in manner and in my thinking, at times think I may be dying.
My wife has noticed this decline in many ways and suggests that it started when I began taking Techfidera. I haven’t kept a diary of my condition so I don’t have clear evidence of this, but it seems reasonable. I have been had a winter cold during this period, and it’s not clear whether the problems are related to Techfidera, but if they are I want to switch back to Copaxone.

To switch back to Copaxone would be an experiment, of course, and even if my condition improved it could not be concluded that Techfidera was the cause of the problems. I cancelled my Copazone prescription and it would take some time to retrieve it. I would be without medication for some time, but my MS began in 1983 and I didn’t start Copaxone until 2008, and it progressed only very slowly during those 25 years, so perhaps the damage would be minimal. However, if my symptoms disappear we still won’t know if indeed Techfidera was the cause. My wife thinks it is, and points out that I did well on Copaxone for many years. I don’t wish to experiment on myself but can’t see any other possibilities, and don’t think my neurologist could either, though she may have some anecdotal information regarding Tecfidera and the conditions, which I’m hoping to find here also.

I think these are the possibilities:
1- My symptoms are caused by something else, though I’ve had many medical tests in the last weeks and everything looks normal according to my primary care physician.
2- Tecfidera causes these symptoms but they will disappear.
3- Tecfidera causes these symptoms but they won’t disappear.
4- Tecfidera does not work for me and the absence of Copaxone has allowed the MS to relapse.
I don’t know if 1- is a real possibility — several of my physicians opine that I am healthy.
I can tolerate 2- if the symptoms will disappear in a reasonable period time.
I can’t tolerate 3- and if it is the case I’d like to get off Tecfidera and back on Copazone as soon as possible.
I hope 4- is not the case, and if it is I can only hope that a return to Copaxone will allow me to regain what I’ve lost.

I don’t know how to evaluate these. My neurologist is on temporary leave and I will be consulting with a colleague on Monday. I don’t know the side effects of quitting Tecfidera. I’m not going to take my second pill this evening, thinking that maybe half a dose will help. I’ll likely take only the second pill tomorrow evening, so just one pill tomorrow, though I’m thinking of just going off cold turkey.

Has anyone had, or know someone who has had, a similar experience with Tecfidera?

My husband and I were talking today about how I have declined. Mostly this has shown itself in my walking and balance. While I was having a bit of a rough time since October, once I started on Tec, it has been a steady daily decline. When I mentioned this to the pharmacist at the company who ships me the drug, he said that no one has mentioned any problems with muscle weakness and/or decline in walking ability. I have seen several folks post on different sites saying that they have had problems very similar to ours.

As soon as I started on the two pills a day, the bloating and gas became very uncomfortable! When I spoke to my neuro about it, he dropped me down to one pill a day. It has barely helped.

I am going to try and go off for a week to see if things change. It is very disheartening and discouraging. It makes me angry! I can barely walk and am exhausted by 4 pm.

I too am weakening quickly on this. My right leg has always been a problem, but since starting a full regiment of Tecfidera my left leg( which is all i can count on to get around) in now weak and not balanced!! I was recently diagnosed, i’m scared and don’t know if there is a bright spot at all in handling this disease AT ALL! Also i have serious shortness of breath. I am a singer for a living and if i can’t breath i can’t sing!! I wonder if taking a healthfood approach is the only way to get a handle on this. I have been reading Terry Wahls book and its very informative. I am not sure about these freaking immune supressing drugs. It can’t be helping, it certainly is making me feel worse quickly!

Tecfidera will not work at all… unless you take to two pills. My neuro said it is ONLY effective when both are taken. I dont know why your dr. dropped you to one Pill. That is like having no therapy AT ALL. I am on Tec for about nine months now. I seem to only get a runny nose at times and some clearing of my throat (might be allergies?) not sure. I used to take copaxone. I dont seem any worse..no better either. Good luck and check about only taking on pill. Not recommened

I have had EXACTLY the same experience as you. Am now on the smaller dose of tecfidera (120 2X a day) for a month but thinking after this experiment need to go back on the copaxone which was on for 14 years. Was on tecfidera for 4 months but stopped for 2 weeks to see if things go better off. They were marginally. Tried because on copaxone about 2 X a year had terrible injection reactions — heart pulsating, tight face, trouble breathing, 101 fever for 6 hours and uncontrollable shaking for 1/2 hour but then fine the next day. NEVER all the other stuff which experience on tecfidera which is exactly as you posted. A real dilemna. Quit and go back on copaxone and hope to get back to where I was or tough it out and see if this really works? Neurologist did 3rd round of tecfidera study and is very enthused about it. In the meantime I find each day a challenge with feeling depressed, spaced out, apathetic and plain off kilter.

I too was on Copaxone for 10 years, in excellent control. The neurologist recommended giving this a try, and I was eager to try oral versus injections. Since being on the Tecfidera, my MS has a major flare, and I feel generally terrible. Switching back is an option, but the neurologist wishes me to be off of any MS medication for 6 weeks before I can start the Copaxone. This scares me immensely. Is that what you are hearing from your neurologist?

Bobpi
I have been on tec for 1 year. I change from copax because I had some changes in my MRI. I hate taking the Tec I have all the same problems you are talking about. Starting with being tired and wanting to go back to bed one hour after I get up. i did not have this problem until I went in Tec. I also have intestinal issues. Constantly needing to use the bathroom more #2. The flushing has never subsided for me it is worse in the morning only because I am awake. at night I try to fall asleep before the medication kicks in. I seem to be forgetting things more. But my wife says that’s because I’m getting older. I think it’s because I’m married with children. Lol. I want to change to the Once a day pill G I can’t go back to copaxon because it stopped working for me. I was diagnosed in 2006. I have had only a few relapses but had to change. Has anyone been on G for more than a year and has it slowed down the lesions. Let me know thanks.

I was on Gilneyia for about 4 years.. during the 4 years i did 2 MRIs and in both i had more lesions so my new doctor decided its time to change my medicine.. now i’m on tecfidera for about 2 and a half weeks i am suffering from the flushing and stomach pain but at least the migraines decreased !!

I once had spontaneous flushing drinking a Red Bull, my face and upper arms turned bright red, and were burning. I was in my car driving on my way to see clients, and there was no way I cold see them like that. I called the nurses from my homecare company and they advised me to try benedryl, with in five minutes the redness subsided. I later discovered that Red Bull really any energy drinks have a high B vitamin content which causes flushing. Tecfedira appear to have a high B value to it as well hence the flushing. I am not sure if its better to take uncoated baby asprin, or benedryl, but I do know that benedryl helps with flushing, and allergic reactions.
Hope this helps.

I realize that this hasn’t been posted on in awhile, but I’m 20 years old and have been on Avonex since I was 14 when I was diagnosed with MS. I went to my neurologist today and he helped me make the decision to switch over to Tecfidera seeing as my shots are becoming way too difficult to give myself. I just can’t bring myself to push the button on my injector pen, anymore. Plus, with Avonex, I’m still getting symptoms after all that time. I’m aware of all the side effects of Tec, and hope to push through them because in the end I feel it will be worth it to not have to inject, anymore. Reading all the positive comments about this drug have eased my mind a bit about starting. I’m pretty excited.

I am 60 and have been on Avonex since 1997. While I don’t like the IM injections, I couldn’t apparently tolerate the mannitol that the others, including Avonex prefills (they are no longer), were used. I have awful bladder retention and at this point think I need a therapist that understands chronic illness (I have more than MS going on) and I think I am getting depressed, but don’t want to admit it. 🙁

I can’t handle injections anymore. I was diagnosed in 2007 (Kaiser). I think that’s all any of their Neurologist will prescribe. First start with Avonex, then betaseron and they all made me very depressed. I lost my career occupation (Printing). I was broke, MediCal wanted me to pay the first $1400 monthly share of cost. Therefore, I had to paid out of pocket for a new neurologist (Dr. Schafer John A.) and he got me Tecfidera. I get it free for a year+ if needed through MS Active Source I believe. God bless him! He did everything in his power to help me. Free Tec, brain mri, cooling vest etc.
The first month and a half of Tecfidera is harsh on the stomach. Eat a meal take some pepto and some Beano. Followed by pepto. I’m no doctor but that’s what is safest on my body and worked the best for me. Don’t waste your money on gasx because it only last a little while. Charcaps ok but I say after maybe a month then its just like taking a vitamin. Take vitamin d please.

Have been on Tecfidera for 4 months without the flushing or gastro problems BUT chosen to stop it and see how I feel. Has left me feeling very dazed and lightheaded. It did totally increase the strength in my left hand and left leg. Right now it is too hard on me to wake up eveyr morning feeling so unable to face the day. Made me feel anxious and just generally unwell. Hope it works for many. Need to talk with my neuro and might be back on copaxone which I took for 14 years.

I was diagnosed with MS when I was 16 years old and started on Avonex just after turning 17. I only lasted on Avonex for 1 year due to the side efffects and being unable to inject myself, the injection pen wasnt available then.

I had been relapse free until June 2012- 8 years after stopping medication-and it was decided that I should try Copaxone. The daily injections started off well but soon I couldn’t use the auto-ject and relied on my partner to give me the injections just using the syringe. This was hard on him as well as myself, injections were painful with or without auto-ject, quite often causing problems with my skin and my ability to walk.

1 week ago, I became the first person in Scotland, well the whole of the UK to be given Tec!!!! I was so excited about getting the tablets I cried when I got the call. 1 week in and I am about to move up doseage. The only side effect that I have experienced is flushing and this has only been twice, first flush was a few hours after taking my first tablet and second flush the next morning after my third tablet…nothing since.
I spoke to my MS nurse about the side effects and feel the same as you…it is well worth not having to inject anymore.

Hi there – new to this post as I started tecfidera and wanted more info on the side effects. I was diagnosed when I was 19. I am 35 now. I started on Avonex but my side effects never went away – it was horrible. Then Copaxone, then Betaseron. I have made the switch to Tecfidera 2 weeks ago: I feel pretty lucky! A few HOT flashes but feel amazing otherwise. Please let me know how you are feeling after all these months – and so sorry for everyone who continue to be symptomatic. We WILL beat this together!

Help. I’m a 52 year old woman that’s had MS for 19+ years. My new doc wants to put me on tecfidera, but am concerned about interactions with all my heart meds (had a heart attack in april) – bp meds of metoprolol and lisinopril, blood thinner of clopodogrel (generic Plavix), baby aspirin and simvastatin for cholesterol. I could not find any data about drug interactions. also worried about health risks of having reduced white cell count – how low is too low to fight normal infections (uti’s, flu, pneumonia?) Sorry to ask so many questions, but I am scared! any info would be really helpful.

I have been on this for 3 1/2 months; I always take a baby aspirin w/my morning dose. This definitely decreases the flushing and sometimes I don’t have any at all. Hope this helps. Am anxious for my 1st MRI 🙂

Hi I’ve been in Tecfidera for 6 months after having an allergic reaction to Copaxone. I also get the flushing/burning. I’ve noticed that it happens less after a hearty meal. So, try eating a full meal before taking it – it should lessen or not even happen at all. I hope this helps!

59 yo female diagnosed 10/31 with MS. I started on Tecfidera mid November and was on the full strength dose for more than a month when I started having REAL GI problems. Thought it was a virus, so didn’t do anything other than treat symptoms with Maalox, Tums, etc.. Symptoms got so bad they were waking me up in the middle of the night nightly with stomach pains and GI problems and pain continued nearly non-stop. Contacted neurologist’s nurse and resulted in her saying to stop all medication and see doctor at Jan. 31st appointment. I am VERY NERVOUS about not taking anything until that time. I do NOT want a relapse as I had while I was on a cruise to Alaska in September, which started my diagnosis journey. I suffered from time loss, gait problems, and brain fuzz, all of which has improved tremendously, even before starting medication. Not sure what to do now?…

I know what your going though. Stopped copazone after 10 years. At first no sx but 2 months in started having GI problems that icannot tolerate any more. Was so hoping this oral pill would be the answer. This med was not tested on peopleover 60. All my reading of reviews on different sites seem to say people over 60 have severe GI problems. Wondering if manufactor is aware.

I have been on this med for 8 months and the GI problems cramping and diarrhea started after 2 months and show no signs of stopping. I feel so awful. I am over 60 and agree that the makers should be aware that this sx in people our age needs to be brought up. Will talk to my MD in 2 weeks regarding stopping and what next? Might go back on copazone. Very discouraged.

I am over 60 (61), diagnosed only 2 years ago and have been on Tecfidera since July 2013. I have never had any GI problems. My only side effect seems to be if I take the first dose later in the AM, once in a while my ears turn beet red and feel hot, but that lasts about 20 minutes or so and fades away. Just had a MRI a few weeks ago… nothing new there.
I’m thrilled to be off 8 months of Rebif — elevated my liver enzymes and I felt lousy (never woke up feeling “good”). So, other than wondering if my elevated cholesterol levels have any connection to Tecfidera (shot up since last April), since I’ve made no other changes, I am fine on Tecfidera .

I started on Tecfidera 9/12 with the 120 up to 240mg. LIke others, I was symptom free for several weeks, then the flushing and belly cramps began. Its 11/14 and the flushing has not really subsided, and sometimes is accompanied by little hives during the flush. My Neuro says that’s an ok side effect.
The belly cramps were because I was not taking the pill with near enough water. If you are having the cramps, lessening the dose for a few days and taking the pill with tons of water may help. Good Luck to everyone. If you’re all like me, the shots were just too awful to bear!

I started on Tecfidera on August 25, 2013 with the 120 up to increased to 240mg beginning on 9/1/2013. I was symptom free for the first week with light flushing, then I began having extreme flushing and redness for the next several weeks. I became irregular and had some stomach cramping. then the flushing and belly cramps began. Its 11/14 and the flushing is persistent and is sometimes is accompanied by chest and arm redness. the flushing sensation felt like boiling water had been poured on my head and it was slowly seeping though holes in my head. I was painful sensation. I had extreme achiness around my, behind my ears, at the base of my neck and shoulders. I was thirstier more than normal, and began gaining a lot of weight in month two & tired despite the fact that I take Adderall for wakefulness; with Provigil I would become jittery, and not able to focus. Margaret in Nashville, TN

HAVE HAD MS FOR 21 YEARS. BEEN ON COPAXONE, AVONEX, IVIG’S, CHEMO, STEROIDS, AND THEN WENT ON TYSABRI 7+ YEARS AGO. TRUE MIRACLE DRUG FOR ME. HOWEVER, HAD REALLY MASSIVE EXACERBATION THIS YEAR, AND HAVE HAD TROUBLE GETTING BACK TO “MY NORMAL”. NOW JC virus POSITIVE. LIVE IN GA 6 MOS AND FLl 6 MOS. GA. DR SAYS STAY ON TYSABRI – FL. DR. SAYS SWITCH TO TECFIDERA. DON’T KNOW WHAT TO DO. ALREADY H AVE LOTS OF STOMACH PROBLEMS AND TAKE MEDS FOR THOSE ALREADY – ALSO HAVE SEIZURES MS RELATED. DON’T KNOW WHICH WAY TO GO? ANY SUGGESTIONS?

I was diagnosed in 2005. It’s been pretty mild. My relapses have consisted of numbness and such. Nothing some steroids couldn’t fix. I just had a baby and my MRI showed ” significant amount of new lesions” spine and brain. I dont even have symptoms other than slight balance issues. Doc wants me to get on tecfidera . I liked my rebif and I’m scared of tecfidera ! Don’t know what to do. I’m moving to England ( where it is not even approved) but doc said they can give me a year supply. Very scared. Thanks for your postings! It helps a lot to read what people are going through. Thanks again!

Hello, there is a drug in Germany that has the same base drug, actually, it’s what this drug is based on. they have been using it for people with psoriasis for over 30years. and 1.00 or so a dose…I have been on Tec for 6 months and am going to speak to my neuro to go to half dose or to just end it. I was good for the first 6weeks. then mad redness/heat/hives, which still have. and the past 3 months GI issues that I just had to endure an endoscopy and had a colonoscopy in dec due to issues. I just can’t take it anymore. so you may want to rethink. I will not ever do shots, so my only option is to go supplements and foods.

First I want to say I was diagnosed with MS in October 2004. I started on Copaxone and I took it for almost 9 years. It started getting very painful to inject the shots. So I spoke to my neurologist and he suggested we try Tecfidera, I was thrilled and kinda nervous about starting a new treatment after all the years on Copaxone. But I agreed to give it a try. After almost 3 weeks battling with insurance about paying for it. I started Tecfidera 120mg. twice a day on September 21st with minimal side effects (mostly feeling flush). I took the 120’s for 7 days and then I began the 240mg twice a day and at first things seemed to be progressing as it had been. Then on day 4 of the 240mg.’s I had some diarrhea but I continued on. The next day I was really nauseated. I was committed to making this work. The next day I was still extremely nauseated. Then on day 7 of the 240mg. After the morning pill I became really nauseated and I took diarrhea. After the PM pill I was nauseated and I started having severe stomach cramps. I was unable to get off the couch except to go to the bathroom. The next day the same thing nausea and severe stomach cramps. I stayed on the couch. All of this brings me to today I’m suffering from nausea, severe stomach cramps, and dyspepsia. I’m on the couch still. I’m in extreme discomfort and I’m debating in my head if Tecfidera is for me. If anyone has any suggestions I’d sure appreciate them. I know I can’t live like this.

I was diagnosed in March of this year, and my neurologist put me on Tecfidera right away. (Normally I would not jump on a new drug bandwagon, but I was heartened by the 8 year safety profile as a psoriasis drug.)

I was much like you; fine on the half dose, but had majorly intense abdominal pain and diarrhea upon starting the higher dose. I was taking the medicine with food, and a baby aspirin with each dose. Here’s what worked for me. The doctor told me to give it a day or two off until my pain subsided. Then to take a single 240mg pill a day for 7 days. I also stopped taking the baby aspirin, and I think that also helped, as any aspirin can cause stomach issues. (My doctor also noted that in taking the coated aspirin, I wasnt really helping myself, b/c the aspirin wouldn’t kick in until it was too late). After 7 days with no major problems, I went back to the twice a day full dose, no aspirin, and I haven’t looked back. I have had the occasional flushing incident, and I do find that I am thirstier more often, but these seem like minor issues. Please check with your doctor, maybe this course will work for you too. It somehow seemed to give my body more time to acclimate.

To add to the above, I am JC negative, and my doctor is monitoring my CBCs and liver function. Checked bloodwork in July, slightly elevated liver, but so far so good. Going for bloodwork again in November, more of a real test b/c will be over the six month mark since on the full dose. After wrangling with insurance and all the intestinal issues, didnt really start until mid-May.

Sally does that mean you took the lower dose for 14 days then with food, plenty of water and uncoated baby asprin? Im about to start Tecfedira and what to do everything possible to be successful. the injections from copaxone let me with large, itchy welt that lasted for 4-7 days. I just couldnt find the will to stick with that. It was just to much discomfort, I was running out of injection sites and feeling very defeated by it all.

Thank you, Sally, this really helps and gives me confidence to start the pill as scheduled. Did Tylenol help, instead of aspirin? And what type of food is best for you with the pill – anything to avoid or a must to eat prior??

My first two weeks on Tecfidera were completely uneventful, but on day 15 I started having nausea and on day 16 I was vomiting and running a low fever. I stayed home from work thinking it was a stomach virus. By the following day, I was ill enough I couldn’t keep my meds down and stopped taking the Tecfidera. I was also having very severe stomach cramps. I finally got in touch with my neurologist who convinced me it was the Tecfidera not a virus. It took a few days for the pain and nausea to subside and then I started the Tecfidera and a strict regime of 325 aspirin and 20 mg Protonix 30 min before eating. Then Tecfidera after the meal. I’m now going into month 3 and experience no stomach pain, only occasional flushing and a twinge of nausea here and there. I do continue to have a runny nose an hour or two after I take it, and my ears pop and feel congested. My neuro said its common and I can try an antihistmine if I want, but I haven’t bothered. The runny nose only lasts a short time. I hope this gives some people hope to try to stick it out. I was on Rebif for several years and am thrilled to be off it!

Interesting and thank you for sharing your experience. Do you think that eating first made the difference in avoiding the stomach problems? Did the running nose, flushing or nausea ever completely go away? And if so, what did the trick.? I really appreciate any guidance.
Jay

I too had the nausea, severe cramping, and diarrhea about a week after beginning the 240mg twice daily. I was instructed to take a baby aspirin (81mg) and a claritin (loratadine) each morning before my pill. I was also instructed to eat a high fat/protein breakfast. I immediately started with the baby aspirin and claritin and ate a greek yogurt while taking my morning dose and I have had NO more side effects since then. I highly recommend trying this unless you are allergic to either of those meds.

Thank you all for sharing your experiences. It is a wealth of information [old and new] and I am trying to make it current and relevant for my decision whether to start oral Tec and leave Tysabri, now being JC+
Thinking like a Tec for Dummies reading and realizing that everyone is a bit different…is it fair to say that if you take the oral pill with a meal [not salad, but perhaps a big fat P&J sandwich] and a baby aspirin pill, then that should make it uneventful. ??
I am trying to cut through all of the history and come up with a current common recommendation that works for folks successfully without the side-effects. Am I close to it??

Each of you are brave and resourceful and I thank you for sharing you path – fight on !!

Hello, I started tecfidera on 8/4 with the 120mg dose. That first pill made me a little sick to my stomach with small stomach pains but was gone after a few hours. The rest of that first week was heaven, I felt great. On 8/11, I started the full dose of 240mg and felt a little sick to my stomach but not bad. Until that night, the stomach pains got so bad from then on I was only able to sleep for hour at a time, if that! Each day,, I was eating less and less bc of the excruciating pain my stomach. I felt like I was being poisoned. On day 10 I started with a fever of 101.4! And I went downhill after that! Took another pill on the morning of day 11 and continued to be in such pain I could only moan clutching my stomach! Then my fever went up to 103.4 and I started vomiting 5 or 6 times. I also was having really bad flu like symptoms, my legs were in such pain it hurt to stand up. Really only drank a sip of water that day and couldn’t even attempt to eat anything! My father ended up having to take me to the hospital but after almost 3hrs waiting and being told we probably wouldn’t even get into the ER until after midnight, we left. My fever was down after taking some Tylenol. My Neuro told me to stop taking the tecfidera right away. It was another full week till my stomach pains went away completely! My Neuro wanted my to try it again but staying on the 1/2 dose for 2-3 weeks but I said no way in hell! I’ve now decided to NOT go on any of the MS therapies! Sick of those chemicals going thru my body. I’ve decided to try the healthy route. There are so many books and online articles about people who have “cured” their MS! The latest is a female doctor who was diagnosed in 2000 and decided to get off the meds in 2007 and do the healthy route. In 9 months she has no signs or symptoms and she had a very progressive case! She has done TED TALKS and you can google it and watch the video. Hope some of what I’ve written helps someone!

You are my hero. I am sooooooooooooooo sick from Tecfidera. Been on it for 3 WEEKS and feel worse than I ever did with the MS. I read about Terry Wahls and am sick of the poison (Prescription Meds) I am putting in my body.

I have a Dr.s appt in a couple of weeks but am calling TOMORROW to find out how to get Off Tecfidera.

Hi Sandra,
I follow the Wahls Protocol, I began after reading her first book “Minding My Mitochondria”. I f you read the book you find that it was not chemotherapy she took. Eating 8 cups of leafy green veggies, making sure you have a diet balanced per the protocol which includes getting sulfur rich vegetables, berries, eliminating gluten and dairy if appropriate for you among other things is what radically transformed her life, and is transforming mine after 20 years of living with MS. Please folks read the book for yourself, not just go by what you heard or saw on YouTube or TEd.

Nancy. You are having such a positive experience do you take the full dose aspirin and an acid reducer with your dosage ? I am so afraid if the stomach pain. It will be another week before I take the full dosage since I am on a slower titration. I’m taking 120 in am and 240 in pm now. Terrible headache today. Had first dose of 240 last night. Wish you well!

I’ve been putting off going on Tecfidera because I’m + for JC Virus. I’ve had blood work, & my Neuro wants me to have it every 3 months, but it sounds to me like this wouldn’t be a long term treatment option anyway? I’m almost sure the minute my WBC’s go low I’ll be off of it, so why even start & take the chance? I work in a hospital, full if infection, & I’m not even allowed to get the flu shot! Anyone feel the same apprehension?

I feel the same apprehension; but, I started Tecfidera 8/28. I’ve tried Copaxone, Avonex and Tysabri and am + for JCV. I also work f/t in an area w/lots of potential for infection. I’m hoping this works and maintains my current health w/o progression. I discovered VERY quickly to take it after my meal to protect from severe nausea. So, my fingers are crossed and hoping for the best.

Why can’t you take the flu shot? It’s a dead virus. I’ve been on Tec for almost a month & it’s going great. No more shots! Why is Tec not a long term Tx? It will be for me. The reason to take the chance & try it is to slow the progression of your M.S. M.S. is working in your brain all the time, even if you feel well. When the damage is bad enough, the disability will show up. Then it’s too late. The damage cannot be undone. Refusing an M.S. Tx is a risky business. Instead of being sure it will fail, try to have a positive attitude. I don’t want to end up in a wheelchair so I have been on Tx since day one. And I’m doing very well after 15 yrs. I see what happens to those who refuse Tx & don’t take care of themselves. I refuse to end up like that.

Hi Gail:
Thank you for encouraging everyone to try to stop the progression. I was diagnosed just over 23 years ago while planning my wedding to my wonderful hubby. I’ve tried all the ABC drugs but not Tysabri. I have been on Chemo for 9 years and my Neuro is afraid of what Cytoxin might be doing to my body long term. I have done very well, didn’t loose my hair or fingernails etc. Now she wants me to try Tecfidera. I recently got meningitis from taking ibuprofen. Only about 14 cases of aseptic meningitis in the U.S. I’m really afraid to start the Tecfidera. How are you doing on it now?

I started taking tecfidera and I to was very apprehensive. It was a mistake for me to start on it. I had an immediate reaction to it. I was hot all over and red as a tomato. I also had tingling in my mouth and severe stomach pain. I would’ve taken the diarrhea instead of any of these. But every person is different and has different reactions to medications. I have the same similar issues you do and I wish I never would have taken it. The side effects were not worth it. I didn’t want to leave the house because I looked red like I had been sunburned aside from buckling over from abdominal pain. I’d say use at your own risk. But like I said I’d heard great things about it but everyones bodies are different. Just BC I had a bad experience doesn’t mean you will. 😉

I am to begin Techfidera tonight. DR did prescribe the 120mg for 2 weeks knowing my body is sensitive to increased drug doses. I am so scared about how it will go. I’ve been eating healthy – lost 70 lbs after breaking my ankle beginning of march. Ended up in an MS episode and bad neuropathy by middle of March. Started taking Neuropathy support formula 3 months ago and it is now helping a lot. I’m going to see how it goes this holiday weekend and if side effects too bad will have to stop. I’m buying imodium and baby aspirin and see how it goes. I will take with food – just knowing my body is already in the healing stage from my previous issues don’t need anything more. Any suggestions or words of comfort? Thank you. God Bless.

I’ve been on it for almost a month & am doing well. Most people have few problems & side effects usually clear up after a few weeks or a few months. Try going to this facebook page: Oral Tecfidera for Multiple Sclerosis Support Group. Most of the people on there are having some side effects & that’s why they go there so don’t let it discourage you. It is a great online support group.

I started the medication yesterday. My doctor gave me the 120 mg. for 4 weeks. Since I react badly to drugs, I emptied half of the contents of the capsules before taking, so I only have taken 1/4 dose. I have some mild flushing and some indigestion, but not bad. I hope to increase to 1/2 dose after the first 2 weeks. I am trying to find out if the flushing eventually stops, because I do not think I will ever get to a full dose if the flushing side effect continues throughout treatment.

I was so freaked out to start this drug. Meds hate me and seem to have every side effect you can get BUT miracle of miracles surviving at week 6. Always took aspirin 81 mg an hour before and made sure had food on stomach. Have been taking probiotics for past year on advice of gastro guy and no stomach problems. Have felt more fatigue and a little weird and spacey but hanging in. Definitely feel more strength in left leg with foot drop and strength in left hand.

I am starting tecfidera tonight and I have 3 questions. 1. How long after the pill is taken does the flushing, itching start. And, 2. how long does it last? Is it constant? I want to take it with dinner. 3. How will I know if I am having a normal reaction and not an allergic reaction?

Read the website postings for several days before starting my meds. Took the advice of eating before my dosage and taking a low dose aspirin. All good advice. On week four and no side effects, not one. After being on copaxone for 15 months I was ready to quit. The larges dents on the backs of my arms, front of my legs and backside was all that I could take.The burning and itching were over the top. I had gained 15 pounds when I started the copaxone and couldn’t get it off. Once off the copaxone my weight dropped off and my whole demeanor changed. I am HAPPY again. It took me 3 weeks to get my insurance to cover my meds but once the song and dance was over it arrived by UPS. With Biogen’s co pay I only have $10 out of pocket. I would highly recommend this med. For those who are in the waiting period, hang in there. I believe as more doctors see the positive results and prescribe tecfidera, the less hassle you’ll have with insurance companies. My last words are, thank God the FDA approved this med.

Hi Donna, Thank you for your post. I’m beginning tonight. Going to take after I’ve had supper and a baby aspirin. Just can’t deal with more issues as I’m finally getting over broken ankle, neuropathy and ms episode. Hearing you didn’t have any side effects was a positive thing.

I began taking Tecfidera jut over a month ago and have had very few problems with side effects. I take one aspirin with each Tec dosage which seems to help. On occasion I have felt very warm (hot flash type of feeling) but have experienced no flushing. I experienced bad stomach cramps the two times I took Tecfidera on an empty stomach. I rarely experience any MS symptoms these days, which I attribute to the Tecfidera.

I’m in day two of Tecfidera. On day one I experienced the nausea, but eating a few crackers helped. Then came the flushing. Boy oh Boy!! I’m tanned, but I looked like I had a very bad sunburn. My co-workers were really worried about me, but I was back to normal in about an hour. On day two I had no nausea, but the flushing was just as bad as the first day, but it lasted only about an hour again. I’ve been on Betaseron for 20 years so I’m going to stick this out as long as I can. I hate the idea of going back to shots!! I’ve laid out ibuprofen to take with Tecfidera tomorrow morning. Hopefully, day three will be a little better. Thanks for all the great information everyone is posting.

I’m in month 3 and the flushing is still going strong. Neuro says thats ok.
Haven’t tried the baby aspirin like the above posters said because truthfully, its just not that bad.
I feel great, and so happy to not be taking shots anymore!

I was Dx in 2009 after years of random symptoms! I did Copaxone for a couple of years, but site reactions became intolerable! After a new MRI showed disease progression, my neuro put me on the Tec… I lasted about two weeks. The initial flushing and itching subsided somewhat, but the nausea along with headaches, chest/neck/shoulder pains have just worn me down. I’ve tried all the hints and tips to no avail!! Taking Zofran hasnt helped!! Even after three days off the Tec I am still nauseated. I described it to a friend as perpetual morning sickness – miserable!
Calls to my dr have gone unanswered. I called the Biogen 800- number and got no answer!!
I am also concerned about infections! I have sinus/asthma/allergy issues year round and tend to catch every bug going around! After I read about the woman dying, it made stopping the Tec easier! Trying to get better shouldn’t kill you!! (Someone mentioned a “runny nose” – I did experience that as well!!
I don’t know what I will do next. I’ve been treating symptoms and living with the pain. My ms is complicated by severe neuropathy, chronic low back pain, and fibromyalgia. :).

I never heard of anyone dying on Tecfidera. The rising death toll is the reason I stopped Gilenya. Please tell me where this information is available. I started Tec. about three weeks ago and so far have had only very mild reactions. So mild in fact I can’t really attribute anything to having started this drug. I do ALWAYS take it with my meals and not small snacks, because I’d read somewhere that taking it with fatty foods tended to reduce the likelihood of flushing and stomach upset. So far, so good in my case, but I know that everybody’s body is different and reaction to a med can vary from person to person.

A 59 year old woman had been on tecidera for 6 weeks and needed to stop. The side effects were too much for her to handle. I believe she had a history of chronic lung problems – which blows my mind that she was presribed the tecfidera by her doctor in the first place! Biogen denies that tecfidera had caused her death. She died 2 weeks after stopping tecfidera. Maybe she didn’t die while actively using the drug…BUT it does not take a rocket scientist to see it was the PROXIMATE CAUSE of her death.

There has been NO LONG TERM FOLLOW UP to its use.

We are being given a product that was used as a potent allergenic sensitiser and used for its antifungal properties. It is good at stopping the growth of mould in finished products such as leather couches and shoes. The white crystalline powder is packaged into small sachets, similar to silica gel sachets used to remove moisture. Whilst silica gel is an inert substance that removes moisture, it is not that effective in preventing mould growth in large leather items, hence the use of DMF sachets.

It’s use in furniture and other products was halted since people were having serious skin and breathing reactions.

After it was taken off the market…BIOGEN found a new use for the treatment of Psoriasis – a serious skin affliction.

Now they’re using it for MS. I’m waiting for at least a year before starting.

Cindy,
What you posted sounds almost as if I wrote it. Same problems and all. I was thinking of starting Tecfidera. I tried twice to have someone from Biogen call me and it never came about. They were right there when I started Avonex. It does not give me a strong feeling about this new drug. I have been waiting for a pill for many years and was really excited when this came about in March of this year. I have not been on anything treatment for over 3 years. I did OK until this year. I have some problems happen that didn’t go away for 7 months and that scared me. I thought this oral Rx would be a God Send. But not hearing back from the drug company themselves makes a person wonder. I have a phone appointment with my Dr. later this week and she tends to lean on the safe side of things. I am starting to think I may hold off some and just work on eating well, working my body the best I can and keeping a healthy mind set. Being thankfull for the blessings I have.
All My Best to you In All Things Cindy,

I just completed my first month on Tecfidera and have recently started having very severe issues from the medication. While I have not had any recurrence of symptoms, it feels like the pills are eating my stomach from the inside out (I’m sure this isn’t medically accurate, but just a description of the pain). I’ve slept an average of 3-4 hours a night for the past 2 weeks and have been dancing between bouts of constipation and diarrhea. The pain has gotten so severe a couple times that it has caused vomiting and I have been missing work. Anybody else have a similar experience? If so, what did you end up doing? My dr. suggested I take aspirin 30 min before taking the doses, but I haven’t noticed that helping.

Your post could have been written by me. You are a lot braver than I am, lasting a month. I completed just over 2 weeks of this torture pill and the severe GI symptoms hit like a ton of bricks. I can’t recall what it feels like to have an appetite. I couldn’t be at my job teaching because the stomach pain was so severe. Every time I took a pill I vomited about 2-4 hours later. My neuro recommended phenergan and prevacid-did nothing. My internist suggested zofran and zantac-did nothing.
I may be dehydrated at this point. I am very lightheaded and probably am low on potassium and sodium. Many work days lost. I really feel poisoned. I read on another patient forum blog called This Is MS that 60% of people have mild symptoms whereas 40% have medium to severe. I know what range I fall into.
I wish everyone well and understand that everyone’s body responds differently to meds. But tomorrow I tell my neuro that I will not take another one of these pills. They are destroying my gut.
Wishing you all the best. Aspirin will only give your gut more acid to add to your vomiting. You have to decide if you can tolerate daily vomiting and abdominal pain. Be your own patient advocate when you meet with your neuro.

I tried Techfidera, having major problems stomach pain, flusing diarreha constipation etc. Call doctor she said to go to one pill a day, still a problem. every drug I have tried have been painful in shot area, lumpsTried copaxene, avonex with same results. To me my quality of life sucks with these meds. What do I do? Going to doctoe Friday July 19 to find out anything possible.

Im on wk 5 with Tecfidera and my MS has gotten worse then ever! Was on copaxone prior to this new meds & was doing good. Recently my right leg went out and my left leg is having skin sensitivy and is burning 24/7. I dont think this pill works for me. I really dnt wanna go back 2injections. I hate them! Specially with the heart attack symptoms it had given me. I really had hope for this pill but i no longer do. Might just quit them. MS was supposed to slow down not progress in such fast pace.

My ms got worse too! I had stopped the Copaxone I was taking about 2 weeks before starting the Tecfidera and was actually feeling great! Then after starting it within the first week I started limping more again and was having fasiculations in my lower legs that worsened at night. Or maybe I was just more aware because I was still and could be more aware of my whole body than during the day. That scared me. I also had the flushing and itching soon after taking it but that woul go away after an hour or so. My nose also started running which I haven’t seen any one mention. That was new! I went into the second week with the full strength dose but was feeling so bad with all these symptoms conditioning that I stopped taking it. I am very disappointed, as I thought I would be able to give up the shots. At this point I guess not yet. One last point. I am a speech pathologist and a running nose can be a sign of aspiration risk. There was a death recently after a woman started Tecfidera from a pneumonia common to MS patients. I can’t help but wonder if it wasn’t caused from her nose running resulting in aspiration pneumonia. Just food for thought. Good luck to everyone.

I’m sorry to hear you gave up so soon. You could have stayed on the 120’s for a few weeks till you got more used to the drug. Also, being off Copoxone for 2 weeks could have caused disease progression. You probably could have started Tec the day after your last shot. I don’t think you need a dry out period. Think about trying again & staying on the 120’s for awhile. This is a very effective, easy drug if you can get past the initial side effects that some people experience.

I want to say on this subject is as we all know one treatment is good for one ; bht not for another. Started tecfidera low dose for 2 weeks then increased to full dose. Stopped copazone for a week before starting. Really no problems until 2 months later. GI problems have gotten so bad( have tried everything)here it is almost 6 months into med and I am done. The worst part is the diarrhea. I have resorted to depends so i can leave the house with some dignity. Have not read anything on how to control this side effect.also can’t say i feel this med is doing anything. Will see MD ask for an MRI and go from there. I am 63 years old and retired RN.

hii every body my self dr. Singh i m living in india also affected with m.s. i m very happy to coming a new orally drug for M.S. i m taking avonex weekly i.m. that is very hurts you guys are very lucky because uu have orally drugs but have not in future may be u have also a orally drugs in india

I was having a lot of trouble with my copaxone injection sites after I had my son. They would always leave big welts and hurt for days. I talked to my neurologist about tecfidera and she said try it. I had been on copaxone since june 2010. Anyway, the process of getting it approved took a little over a month but my persistence finally paid off. I kept calling my insurance company and the pharmacy I use until it was finally cleared. Got the starter pack yesterday and took the first dose this morning. I was doing fine until about 30 minutes ago. My ears started getting hot, and really red. I could actually feel the flushing go down my neck and arms. I could see my skin. get darker red by the minute. I am now just laying down in the ac and it hasn’t spread any further. Hopefully it doesn’t last too long. I also managed to get copay assistance right from biogen so my copay is only ten dollars. Good luck to everyone starting this med. Stay positive!! 🙂

I am in my 4th week of taking Tecfidera. I had been on Avonex since I was diagnosed in 1999. What a relief to not take those injections and not have the fatigue and achiness that came with it. My side effects have been minimal. The 1st day I had mild nausea and a little flushing since then nothing. I also had problems with minor constipation for a couple of weeks, but increased my fiber intake and it’s better. Biogen is also helping me with the expense since my insurance won’t pay for it yet, because I never took Copaxone. Because Copaxone can cause heart palpitations and chest I refuse to take since I already have heart problems.

Michelle,
I am on my third day of Tecfidera and have taken 1 or 2 baby aspirin with
Tecfidera and the flushing stopped, I found out about this from someone
who just started the drug.
One hour after I took the first pill my face got pretty hot and it lasted for
a long while. I went to the internet and found someone who took aspirin
with Tecfidera and “voila” , no flushing then or since.

Michelle I am just in my first week with tecfidera. The first two days I didn’t think I was going to be able to tolerate it because I was itching and burning so bad. I also had hives over most of my body. This is day 5 now and I only get flushing for a few minutes. I hope it doesn’t get any worse when I go to the full dosage this weekend. I have been on copaxone injections for 11 years and have never had a relapse and my MRI’s have shown no new lesions. However, the medicine hurts so bad I wanted to go to the oral medications.

Sharon , I am with you, been taking copaxone for 11 years. Appears to really be working for me, but the thought of no more daily injections is great. My doctor has mentioned the oral meds, but I am not sure, I know what I get with copaxone and a new med is a little scarey. Just can’t decide. Injection sights are getting harder and harder to find…..

I had a doctor’s appointment today and ask about the tecfidera. I take injections every night copaxone and I have not had any trouble with it just hate taking a shot every night so just need some input on this pill please?

Thanks for the helpful post on understanding this new drug. Just as a note, if anyone experiences an adverse event from Tecfidera, they can report it to the FDA using MedWatcher at https://medwatcher.org.

Full disclosure: MedWatcher is my project, so please excuse the promotion. But it’s completely free, supported by FDA. You can get your voice heard, and really help others.

Wishing everyone health and success with Tecfidera & other treatments. I know living with MS is not easy.

Thank you for your suggestion to contact the FDA concerning adverse and severe reactions to Tecfidera. This is the best patient post forum I have come across in the past few days. As someone has written and we all know, everyone is different and everyone’s body responds in a different manner to medication. I am in my 60’s and after just over 2 weeks on tecfidera my guts feel as though I have taken a POISON PILL. Nausea, cramping, sharp upper GI pains, and twice a day vomiting 2-4 hours after the torture pill. No matter what tricks, what pill aids such as Zantac, Zofran, hydration, easy to digest foods,( trying to) sleep sitting up, NOTHING has worked. I give up but wish all of you out there luck to succeed with this pill. We all need something tolerable to help us with this MS of ours. Not everyone will suffer these insane side effects. S

I have been on Tecfidera for 3 weeks. Had the flushing but now I take a baby asprin with it and I have no problems. I am blessed with insurance but for anyone who has trouble paying for it, I would suggest contacting Biogen directly.

I am in my third week of Tecfidera. I have not had much in gastrointestinal issues, but the flushing is sometimes tough to deal with. It appears sporadically and is very itchy. I think it is starting as I am typing this. I am wondering if Benedryl might be helpful. Tecfidera is costing me about as much as Copaxone did. I am in the catastrophic stage of my prescription coverage and I pay $240 a month. Since I am on Medicare, I am not eligible for the $10 co-pay. Just a note: while I appreciated the very nice weekly medicine box I was sent, I wonder if anyone realizes the number of pills many people with MS take. It does not come close to holding mine and a regimen with two pill boxes would just not work.

I am currently on Rebif..Dr changed me to Tecfidera..Waiting for the process to clear all of the hurdles..Really want to say Thank all of you for your input on taking this new DMD..I have been reading every medical doc I can on this new med. To hear the info from others taking mskes the change a bir reassuring it will work..Thanks to all.

I am 18yr old male and was diagnosed with CIS in April 2013. I was supposed to go on a trial for minocycline. I went for MRI then went.to do a physical and explained to the doctor that my right hand has become weaker in the last couple of days. Doctor told me I was relapse remitting MS and I should go on Tecfidera. I explained to my doctor that my buddy and I had a handgripping match over the weekend this the possible cause of my weakness. I am really concerned about starting medication.
Any thoughts? I really beleive that stress is a major cause of the MS. Anyone out there who has had no medication and try natural. And for those on medication, do you still get mild attacks? I am afraid to end up in a wheel chair I am only 18.

Daniel, I’m glad you reached out here. I’m not familiar with C I S. But I do know that multiple sclerosis can look different in every single person that has it. I’m in a wheelchair now but it took me nine years to get there. as far as medication goes time not a doctor by far. I been on a bunch of different medications. And now I take Tecfidera.

If you have only had one incidence I don’t understand why your doctor jumped to the MS conclusion. Everyone is different, but I went 6 years between my first two “episodes”. I believe the requirement for a MS diagnosis is 2 episodes in different locations and different times. Did you have a Lumbar Puncture? If you have insurance you can probably get a second opinion without much trouble.

Hi Daniel, I was diagnosed with CIS (clinically isolated syndrome, for me it was optic neuritis) three years ago and have been on MS medication since then (copxone, now tecfidera). The standard of care calls for the same treatment of CIS as relapsing-remitting MS. According to my research, it seems that with medical treatment, the odds of CIS going on to develop into actual MS are greatly reduced. I would say your doctor’s advice sounds right. I’ve had great results so far – you also may want to consider doing some research and changing your diet (along with medication) there’s no clinical trial but a lot of anecdotal research pointing to this helping a lot. It seems to be about stopping or slowing the damage process as early as possible.

I have just been diagnosed myself. I was lucky to be given a book by George Jelinek called Overcoming Multiple Sclerosis which is all about ‘trying natural’.

The book advocates three things. The first and most important, and the biggest change for most, is diet – give up meat, fish and ‘altered oils’ (anything like vegetable oil, rapeseed oil, sunflower oil – only extra virgin olive oil is safe). This isn’t just guesswork – there’s hard evidence. Check out his site – http://www.overcomingmultiplesclerosis.org/. If you’re serious, I’d say learn to cook – this is a lifetime commitment.

The second thing he recommends is exercise and the third is meditation (which should both help with stress. I agree with you stress is a big factor – all of my attacks have been preceded by very stressful periods, and it is a widely recognised cause). I have signed up for a Transcendental Meditation course, which is meant to have a really good effect. It’s not cheap, and there are no books to teach it as far as I can find. Maybe you can find an independent teacher who has broken away from one of the big TM organisations.

That said, I’m going to give drugs a go and am on here to gauge views on Copaxone and BG12/Tecfidera

I’m sorry, I accidentally said ‘give up meat, FISH and altered oils’. I meant give up ‘meat, DAIRY and altered oils. Fish is a big part of the MS diet, and a great source of protein as it is difficult to keep weight on on this diet. Very sorry for any confusion.

I was on BetaSeron in the beginning (August 1995). I progressed to Copaxone after a year or so, but had no luck. I then went without any treatment whatsoever (just stayed as active as possible) until June of 2010 (13 years). I dealt with the ups and downs, wheelchairs and walkers, balance problems and cognitive impairments all along the way. I could have joined the rewards club at a couple of hospitals in the Dallas area. I just did not believe that anything could work after so long.

I started Avonex in June 2010 and went for about 6 months before I started having adverse reactions to the medicine. My MS was becoming impossible to deal with. I went without medication again until August 2012 when I started Tysabri. AMAZING!!! You know how we all have that wish for “one normal day”? I feel like Tysabri made me as normal as I’ve been in 17 years. Now, after 12 months on Ty, I am off and flushing my system out to start my prescription for Tecfidera.

I am happy to be off the monthly infusions, and I am not the least bit concerned about the Tec that I will start next month. I’ve been through hell by trying to go “natural”. Everyone is not the same, but I know that the natural route may have done more damage than good. Mild attacks are a small price in my opinion. Don’t be afraid. There is help out there. Support. You won’t go alone. Hell, if you need someone to talk to then I’m happy to help out.

No fear. What is there to be afraid of anyway. The only person who can tell you no is you, and you don’t have to listen.

Nicole, yes I am. After 13 years on Copaxone, it wasn’t really working for me anymore, and I don’t have many real alternatives.The doctor thinks things will improve soon and I am optimistic. How are you doing?

Sue, I started this drug after taking Copaxone on as well. I’m hoping things will improve too. I just came home from horse back riding. I’m pretty tired, but in a good way. you can also email me at Nico@mynewnormals.com.

Joe GarciaJune 21, 2013 on 11:18 AM

Hi Nicole,my name is Joe I to have MS since 99 also spinal cord injury in 94 . Currently I’m on copaxone. My Dr.wants me to change to oral med. my big concern is getting the runs cause I’m In a chair. Do you have any input.
Thanks,
Joe

I just finished week 2 of tecfidera. I have an upset stomach most of the time, no vomiting, but a little diarrhea. Has anyone tried pepto bismol or something of that sort? I’m also very tired–more than usual anyway. Anyone else feeling this way? Hoping it will go away with time.

I haven’t started it yet — still waiting for insurance approval. But when my doctor prescribed it he told me that if it causes nausea for me I should try using Maalox. He also said that it is important to take it with food –never on an empty stomach. Hope that helps.

Friday will be my second full week of Tecfidera. The first day I had the blushing and itching. About the 5th day diarrhea started and has been holding strong ever since. I have also had to take Zantac for my stomach a few times. I am hoping that things get better after the first month. Luckily, I do have insurance and have a copay. My heart aches for those that do not have insurance.

Kathy, I had G.I. problems the first couple weeks I took Tecfidera. I read a blog that was saying that you should have some food with starch, carbohydrates and proteins… And he recommended Jimmy Dean egg sausage and cheese breakfast sandwiches. Since I have been using these I have not had any stomach problems. Good luck

This has worked for me. I typically eat a ot of fruits, veggies, beans, etc. I noticed that I have awful GI issues if I eat this way on the Tec. I eat an egg and cheese burrito in the morning now and am fine. I also have to go easy on the salads.

I have had diagnosis since 1997. Been on Copaxone, Rebif and Avonex. None of these drugs caused side effects, but the thought of taking a shot all the time was very discouraging. I sporadically took injections over the years and thankfully have not had any major hurdles to overcome until now. I started the Tecfidera and am in week 3 and feel like someone has been punching me in the gut. Over the weekend I had nausea and vomitting so bad. The flushing doesn’t bother me because I get that now. I feel like I am getting worse, but do not want to blame it all on the Tecfidera. My doctor wants me to stick it out, but this pain in my stomach and added fatigue is killer. I also hope that this will go away, but I am seriously considering going back on Avonex.

I am on my fourth wk. and I used Sea Bands when I was having nausea the first 2 wks. The bands are for motion sickness or preventing nausea. They can be found at most drug stores and are $8-10. You wear them on your wrists & they work by putting pressure on a pressure point on the inside of your wrists. I wore mine for 2-3 hrs. after each dose of Tecfidera. I also took one baby aspirin for the flushing. Hope this info. is helpful to you.

Kathy,
I am finishing month 3 of Tecfidera and I too, feel nauseous all of the time. The flushing is getting worse, to the point of being painful on my arms, face and ears.

Taking it with food helps the stomach a little, but the flushing is getting worse. I think I’ll try the aspirin. Benadryl just makes me even more tired than I normally am! Good luck and let me know how the pepto works!

Hi Kathy,
I’ve been on Tecfidera for over 2 months. My doctor advised that if you eat something with PROTEIN AND FAT before you take your dose. Ive never had stomach upset because I’ve drank a cup of milk or a cheesestick, or peanut butter before i took the medicine.

However, I decided to quit this medicine cold turkey 48 hours ago because of the crushing fatigue and poor ability to walk that it was causing. My walking was HORRIBLE!!!! Mind you I walk with a slight limp but my dr and physical therapist have never prescribed a cane. But with Tecfidera my walking was so poor I was in constant fear of falling. I was so fatigued I could sleep 9 hours and then take a 3 hour nap after being up only 5 hours and still feel achy and tired like I had the flu. My hands were even weak.

I do feel better afterstopping this drug 2 days ago. I expect to improve as days go by. I will see my dr in 4 days and tell her i want to go back to the 20 mg Copaxone i used for the last 7 years. I only took Tec because i was tired of having to wait for Copaxone to warm to room temp and then take a shot.

And no im not scared of being without any DMD for a week. I didnt take any drug for this disease for the first 13 years after diagnosis. I stand on Jeremiah 28:11 ” For I know the plans I have for you, says the Lord, plans to bless you and not harm you, to give you a hope and a future” ! God lead me to the Wahls Protocol which is not only improving my health, but my 80 year old father who has been able to stop his arthritis meds because of it and we overall just feel better. I pray your improved health too!

My insurance initially turned me down but we appealled and received approval about a month later. I received my starter pack a week later. I’m in my second week with very few side effects. I did get a little flushing the first 3 days after starting and then again a few times after going to the 240mg dose. After 18 years of inections with betaseron I’m in heaven!

I see a very MS involved specialist and he told me that the PML thing was only in patients treated with one of the ingredients in Tecfidera. That ingredient was used to treat another autoimmune disease.

Apparently, the researchers knew about this two years ago but it has recently been brought to light by competing drug companies. The sofa cleaner thing is the same deal.

That is my main concern also Jeannett. The PML risk. I think maybe it’s just to new of a drug treament to really know. I wish some one could be more reassuring about that. I would really like to start a this treatment with new hope in this new year.

Thank you for the info. I have been following all the new drugs with interest. No way could I afford $55,000 a year, which is what I’m told BG12 would cost me. Even though my doctor insists I have RRMS, during the 10 years I’ve lived with the disease I have only progressed, as far as I can see. I have no idea what a relapse or a remission would feel like. I’ve tried Copaxone, Tysabri, Rebif, and finally LDN. I went “drug free” 2 years ago and have felt so much better, I hesitate to go back and ask for drugs again. But curious whether BG12 is the answer (if I could somehow afford it).

I am just getting info on this medicine but my packet says I can get a copay of $10.00 per month. I have been dxs with 2nd progressive MS and have just come off Tysabri due to getting worse. I am just wondering as well if pts that were having a lot of difficulties have seen imporvement,

Laurie I’m glad posted. My doctor also says I have rrms even though my condition has never relapsed. This has made it very difficult to come to terms with MS even though its been 5 yrs. I will be starting BG-12 tomorrow does anyone know if it is effective for progressive?

Hi! I am reading all of these post, and have to say that I really appreciate all of the time you guys have spent sharing your experiences for all of us to read. I have had RRMS since 2000. I have only had one relapse since my initial diagnosis. I have small little annoyances, like tingling once in a while when I get hot, but Sean M, I can completely understand how you feel about being able to come to terms with having MS with no real symptoms. Just consider yourself really lucky, as I do, that we are blessed to have a symptom free form. I have other relatives that I know are a LOT worse off than I am. I am having a consult with my doctor about the best form of medication for me. I haven’t been on meds recently, because I wanted to make sure I was finished building my family before I started back up on meds. Please keep us updated on how you are doing with this new drug. Thanks to all of you for your imput! I wish you all continued health and wellness! Take care!

You have to be persistent with the insurance companies because it seems everyone gets refused before they are approved. Also, Biogen Idec will give you assistance with your copay if you are not on Medicaid. I went drug free for years after being diagnosed in 2001 and I have seen progression since then, but I am still ambulatory. I live in the Midwest and joined a MS research study for Orencia last year. I found that very helpful, but is not approved and requires monthly infusions. I would go online and see if there is a Tecfidera research study being done near you. That way you will be treated and monitored for free. Good luck to you. I feel like I traveled a very similar road as you and I have high hopes for BG 12.

Hi Nicole,
I confess I only skimmed the technical information, but I do have a question that might not have been covered: do they believe that these new drugs (or the old ones, for that matter,) are useful or effective for people in their sixties with RRMS that hasn’t changed to secondary progressive? Is age a factor?
Thanks for the information you have in this post~ 🙂

Terry, I am a 66year old male. I have been on Tecfidera since Septembevr after being diagnosed last year. I was on Copaxone at first. I have had NO reaction of any type.I was told that I have RRMSat first and only time would tell if I had secondary or any other type. I still have some good mornings and worse afternoons. my balance is getting worse and a few other things but at least the mornings are mostly ok.

It is interesting to note a study which was funded by Biogen (Tecfidera (BG-12) compared the drug to other NRf2 activators. Conclusion from the study:
Results:
1. BG-12, tBHQ, SFN and protandim are well-tolerated and strongly induce Nrf2-driven antioxidant enzyme production in oligodendrocytes, with protandim showing the most potent induction.
2. Nrf2 activators are able to protect oligodendrocytes against ROS-induced cytotoxicity.
Conclusions: Our findings indicate that several Nrf2 activators are able to significantly increase antioxidant enzyme production in oligodendrocytes. Interestingly, protandim, a dietary supplement consisting of herbal ingredients, was the most potent inducer and therefore may be the most suited as a therapeutic strategy. Importantly, Nrf2-mediated antioxidant enzyme expression in oligodendrocytes resulted in enhanced oligodendrocyte survival during an oxidative attack.
This study was presented at ECTRIMS 2012.

I would imagine these results were unexpected by Biogen and they are not widely known or publicized. Their drug costs $50,000/yr with known side effects…the natural supplement costs $40/mo.

Hello and thank you very much for your post. I was recently diagnosed with moderate RRMS. I am a LMT and wish to deal with it in a wholistic manner.
I believe in doing the least invasive thing first. My neurologist wants me on a prescription med. I was considering tecfidera because it had the least side effects and was in pill form.
What is the herbal supplement you wrote of?
I have changed my diet and added some aminoacids for brain health/protection. I was numb from the waist down July 2012 (bilateral)
now the numbness is mainly in my feet. My body does not handle drugs well so I am interested in a herbal aid.

I was diagnosed February 14, 2006 😉 A day that will live in infamy for me!

I have been OFF MS drugs other than the symptomatic ones which I am still seeking natural relief for…for 2 years this coming November. Previously, I took Rebif which made me sicker, Copaxone which helped for about 1 1/2 yrs, Tysabri until I developed JC virus (tested prior and was negative) and since it stopped working after about 20 mths we decided the risk outweighed the benefits, and then Gilenya which they gave in the Dr office due to heart rate drops (which of course I had) but they also failed to mention that your immune system drops to that of a chemo patient until AFTER you take the 1st dose–nice, huh?–so after having a sinus infection that lasted 2 months and was resistant to treatment I quit that too….and amazingly I got over the sinus infection finally!
I read about a small study done in WA state I think using L-Lysine (take 2 1000mg tabs q day) with good results so I decided to give that a try since Amino-Acids were unlikely to hurt me. I continued my daily multi-vitamin, yoga for spasticity, and Vitamin D-3 since MS patients are statistically shown to be too low…had a great Dr in NM who had given me an article about that. I am on 4000 mg of D-3 but just dropped it to alternating days of 2000 and 3000 since my D-3 is SO great now–87! Anything below 26 isn’t good by the way!
I NOTICE a difference when I do not take the L-Lysine as well as the other 2 supplements. I am going to look into the other supplement mentioned in the thread as well.
I also gave up Pepsi and all the Diet drinks I was hooked on and immediately saw a difference with the burning and numbness in my legs! Something to consider. I have tried the gluten free diet as well as MS diet and while glutens do not seem to matter for me, eating more vegetarian meals DOES!

I have migraines and know what foods to avoid as well as many of my triggers. Stress is a huge one as it is with my MS acting up…just think happier thoughts and remember there are always people worse off than myself.

I worked in Clinical Research prior to my illness and I can tell you that the drug companies spend $1000s on Drs and the staff (like me) sending us on luxury trips to “train” and “learn” about a drug prior to starting any study. Then they are paid per patient they recruit also. I am NOT against research at all…just remember that you do NOT ever have to do it and think twice if there is a placebo involved because while that may be a decent way to figure out IF a drug works, it also means you may not get any meds for however long the trial is….food for thought. I loved Puerto Rico, Vegas, Dallas, Phoenix and well most everywhere they sent me! Never stayed anywhere less than 5 stars and it was all inclusive…wined and dined….lot of fun…dancing on the beach at night….hmmm…those were the days….but don’t miss they totally 🙂 Learned WHO my friends are when I got sick also!
I truly think that the work being done with stem cells from our own bodies will be the answer….small trials have shown decent results and work in CO looks good….wish I could find a place to sign up for a trial of THAT—placebo or not–since not taking meds it is worth it to me. http://www.stemcelltreatment.org/how-stem-cells-fix-ms/

I was diagnosed on February 14, 2001. Cool, that infamous day means something different for me now. I have no love for MS, despite the constant spastic MS Hug…

I also take a handful of supplements, including 5000 iud vit D, probiotics, baclofen, neurontin, prilosec, fish oil, immune boosters, daily vitamin and minerals. I just started taking Tecfidera, after quitting Aubagio. With Aubagio, i had to go through the rapid elimination process due to low white blood cells. I quit copaxone because of injection site reactions that got worse and I ran out of skin to inject into right about the same time my lymph nodes started to swell up. Avonex gave me flu like symptoms half of the week despite sticking it out for 6 months.

I had some flushing with the first two doses of tecfidera, but added aspirin and all is we’ll now. It’s only been 5 days and I feel fantastic already! Has anyone had immediate symptom relief with tecfidera?

Lynn, I had exactly the same first symptoms and the same residual. I thought I was alone in the world with only spinal lesions! I have modified my many-years’ vegetarian diet to a combination of Swank and overcomingms.org’s recommendations to limit saturated fat, remove dairy (I’ve been vegan off and on over the years, but the times of my relapses, I was on-again with dairy). I did go on tec because I was scared of the spinal lesions coming back worse and actually causing disability. I would like to try, after some time on the tec, to switch to the natural Nrf2 Protandim, but I want to make sure things are stable first. Will wait and see what periodic blood tests and MRIs show.

I have had diminishing of symptoms since starting on the diet mods and tec. Not sure if it’s due to the med, the diet, or just time…

My side effects have been flushing (seemingly due to increased photosensitivity) a few times and lower GI issues in the morning. Some stomach pain the first week, but that is now gone.

At first I was wondering what study you were referring to as only the Define study is ever notated anywhere….so I searched since ECTRIMS 2012 didn’t pull it up. AND yes, it does come up:http://registration.akm.ch/einsicht.php?XNABSTRACT_ID=137548&XNSPRACHE_ID=2&XNKONGRESS_ID=150&XNMASKEN_ID=900
for anyone interested in reading.
My issue with this is NOT that it may be a viable option, as I am certainly all for natural treatments whenever possible, but the simple fact that there was no actual human trials.
SINCE I myself am NOT on any MS meds and am not sold on the BG-12—see what neuro says tomorrow–who knows maybe she will have something amazing to say that will change my mind but at this point I may well look into the protandim. I DO know that things like turmeric are anti-inflammatory which is actually a supplement that I thought to add since I no longer eat Desi food daily…
I still think the stem cells are what will be the true cure for most auto-immune diseases but hey….the MS zombie already started eating my brains back in 2006 so I am not in Clinical Research anymore 😉

Hi Sharon. I had come across this study too when I was researching what med to try next after I came off of Cytoxan last spring. I wanted to wait for BG12, which I heard was expected to be approved this spring. I was so tired of having to have MS med options that had cancer as a side affect! I had read about the success of Protandim, so I just decided to order the supplemental components of it, and take them until BG12 was approved, it was much cheaper that way.
It is made up of 225mg milk thistle, 150mgs bacopa, 150mgs ashwagandha, 75mgs green tea, 75mgs turmeric.

My MS, which was progressing so quickly the previous year, from walking to wheelchair, because my balance, drop foot, & fatigue, stopped progressing. I would only feel worse if I was under stress, got over heated, or ran out of one of my supplements. I am on day 3 of Tecfidera, unfortunately woke up with mild flushing this morning. I am going to hope for the best w/Tecfidera, but plan on continuing w/my other supplements. Best wishes to all.

I have RRMS diagnosed in 01. I have had problems with copaxone at injection sights. My dr prescribed it almost 4 weeks ago, but it has been lost in that prior approval bureaucracy. So I have been without a med for almost a month. Has anyone else had a problem getting prior approval for this? This therapy is actually less expensive than the copaxone so I can’t understand what the problem is.

I’m going through the bureaucracy myself and seem to have been lost in the shuffle. I rang Biogen last week (as they have sent me a Welcome kit and all) and was told someone would ring me back with more information. Haven’t heard a word since. If I don’t hear back this week, I’ll be ringing again. So frustrating.

Barbara – I went through the same waiting game. I am now in my 3rd week. Just be patient. I was given the prescription the day after it came out on the market after trials. I was told by a biogen rep they had over 600 orders the first few days. My insurance will not cover it as it is too new of a drug. There are programs to help with the cost, and thankfully I was able to get on one. Good luck to you!!

My beloved, JP, will start the journey of BG12 next week. JP was diagnosed with Primary Progressive in “06”. JP has tried many things in the MS world pertaining to meds and hasn’t been successful. We are praying that BG12 will be of some help until other meds become available.